Young, black, gay and living with HIV. But not in treatment. – 89.3 KPCC

Adonis Austin was diagnosed with HIV four years ago while attending college in Georgia. He was hanging out with people he shouldn’t have, he said, and he was date raped. He was 19 years old.

Austin didn’t tell anyone about his diagnosis, not his friends, not even his mother. He was ashamed, he said, because HIV is highly stigmatized in the African-American community. He was afraid people would make assumptions about him.

“You know, you’re being promiscuous. That’s why you get HIV. You was doing drugs,” he says. “And for me, that wasn’t the case.”

But just the fear of being judged was enough to make Austin ignore his diagnosis. He didn’t even consider treatment because the thought of running into someone he knew at the doctor’s office terrified him. Instead, he researched the virus online and read about people who had gone ten years without treatment and not gotten  sick.

“I thought maybe I could be one of the few,” he says.

So for three years, the virus replicated itself in Austin’s body unchecked. After college he moved to Los Angeles, and early this year, he started getting sick. His lymph nodes swelled, he got abscesses and he lost 40 pounds.

When Austin finally went to the doctor in February, he learned he had HIV wasting syndrome. He had to start treatment immediately.

For advocates and public health officials trying to end HIV, young men like Adonis Austin represent a growing challenge. Black men who have sex with men now account for nearly a quarter of the nation’s 50,000 new HIV infections annually, a vastly disproportionate share considering their small numbers in the population.

And that share is getting bigger each year, in part because young black gay men are the least likely to get into and stay on the treatment that can bring HIV under control and dramatically reduce the risk of infecting someone else. A study of 2009-10 data from the Centers for Disease Control and Prevention published this month in the British medical journal The Lancet found that only one-third of HIV-positive  gay and bisexual black men got into and stayed in treatment, compared with half of HIV-positive gay and bisexual white men.

“People don’t usually just step into care,” says Jeffrey King, who directs the nonprofit In the Meantime Men’s Group, which works with black gay men in L.A. around issues of HIV. He said many young black gay men do just what Adonis Austin did and ignore their diagnoses.

“And then all of a sudden they come back at some point,” he says. “A lot of times it happens because there’s…some illness that occurs that’s directly related.”

Officials say this is a problem not only because postponing treatment can turn HIV into full-blown AIDS, but because it also increases the risk of infecting someone else. With modern treatment, a single daily pill can reduce the amount of the virus to such low levels that it would be highly unlikely that the patient would develop AIDS or pass the virus on, even through unprotected sex.

The ability of viral suppression to effectively prevent new infections is a big part of why health officials are increasingly pushing the notion of “treatment as prevention.” But the key, they say, is moving fast.

“We have this 90-day golden window,” says Mario Perez, director of the division of HIV and STD programs at the L.A. County Department of Public Health. If a person hasn’t seen a doctor within that 90-day window, he says, “the likelihood of us being able to identify and connect them to care dramatically drops.”

Perez and advocates who work with young black gay men say this is much easier said than done. And even if they can get someone onto care, ensuring that patients adhere to their drug regimens is even harder, because young black gay men tend to face other obstacles like homelessness, poverty, and fear of rejection.

“If a person is going from couch to couch, or homeless, once they start getting all this paperwork that might out their status, or once they start having to take pills that somebody might find, a lot of times these clients will not take the pills, because they’re like, I don’t want nobody to find out,” says Greg Wilson, deputy director of REACH L.A., another nonprofit that works with young black gay men.

Experts say all of these factors contribute to a viral suppression rate among young black HIV-positive gay men that is lower than for any other group, further fueling the explosion of new infections among this relatively small population.

Because of all this, Wilson doesn’t leave anything to chance when one of his clients tests positive for HIV.

He makes a doctor’s appointment and drives his client to the clinic. During the appointment, Wilson sits in the waiting room looking out for anyone the client might know.

“I pretty much know the community so well, that I know if somebody knows somebody,” Wilson says. “So if I see someone, then that’s when I kind of act as a blocker.”

He says he will make sure the two patients don’t see each other, even taking his client out through a back door if necessary.

“If I was a navigator that did not know the community or did not understand, they would walk into each other and feel uncomfortable, and both probably would never come back for services again,” Wilson says.

This highly coordinated, hands-on approach to helping patients access HIV treatment is what L.A. County’s Mario Perez calls “intensive linkage to care.” He says it’s a necessary approach to ensure groups like young black gay men get treatment. But Perez adds that it has become a lower priority as federal funding streams increasingly focus on the treatment itself.

Perez said that a county proposal now in the works will make more local funding available to support the approach used by REACH L.A. and others.

It’s the approach that finally made Adonis Austin feel comfortable visiting the doctor. One of Wilson’s colleagues took Austin to his first doctor’s visit back in February. Now, Austin goes on his own.

On a recent afternoon he took the elevator to the fourth floor office of Dr. Marvin Belzer, an HIV specialist at Children’s Hospital Los Angeles. He had been on treatment for nine months, and he had an appointment to find out his viral load.

In the exam room, Belzer peered at a computer screen.

“So you were 310,000 originally,” Belzer says, referring to the number of HIV particles per milliliter of blood that he had been recorded on Austin’s first visit. “And then you started the medicine, you went to 139 within three months. And then last month, three weeks ago, you were down to 21.”

At 21 copies of the virus per milliliter, Austin’s HIV levels were so low they were considered “undetectable,” meaning Austin almost certainly won’t develop AIDS or infect anyone else.

“You’re doing great,” Belzer says. “I don’t know what else we can do for you except trying to get you to come in regularly and all that.”

Austin admitted he could be better about appointments, and that he missed a pill every now and then. But he says getting his HIV under control has been a huge emotional boost.

“I got it but I’m undetectable. I’m gaining weight, I’m feeling better. That is like pushing me to be like, OK, I can keep going through this,” he says.

It also motivated him to tell his story to KPCC, publicly revealing his HIV status for the first time.

This story was produced in partnership with the International Center for Journalists’ Community Health Reporting Fellowship, which is supported by a grant from the Hearst Foundations.